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Rareshare 2.0 Launched

Last updated 7 Jun 2017, 03:37 PM

RareShare is pleased to announce the February 28, 2017 launch of our new redesigned website– an online community where those affected by rare diseases can find support, guidance and information. It is hoped that this will be an active space where the isolation and uncertainty accompanying a rare disease diagnosis can be partially lifted.  

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Rareshare Newsletter - July, 2017

Last updated 22 Oct 2017, 12:50 AM

With the relaunch of RareShare.org, we would like our members to join in advancing the website’s vision. Our goal is to support new and existing communities to become an interactive experience rather than static online forums.  In order to achieve this, RareShare believes it will take a collaborative effort.  We can accomplish this by building even stronger relationships with our current community members and the volunteers who contribute their time and effort to building and maintaining the website.

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RGI/RareShare Ask the Experts Podcast Series-Adrenomyeloneuropathy Syndrome

Last updated 22 Oct 2017, 12:50 AM

Rare Genomics Institute and RareShare are proud to invite you for the upcoming podcast discussing:

Living with Adrenomyeloneuropathy (AMN) -A Clinical & Research Perspective

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RGI/RareShare Ask the Experts Podcast Series-Antisynthetase Syndrome

Last updated 23 Oct 2017, 08:42 PM

Rare Genomics Institute and RareShare are proud to notify you of the upcoming podcast discussing:
Living with Antisynthetase Syndrome -A Clinical & Research Perspective with Dr Sonye Danoff (Johns Hopkins) and Dr Frederick Miller (NIH)
 

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DISORDER: Rare Disease Film Festival

Last updated 13 Dec 2017, 02:00 AM

When living with a rare disorder, conditions that even most doctors have never heard of, being recognized, acknowledged, and understood is difficult and sometimes impossible. With advancements in technology, individuals have more creative freedom and ability to tell their stories – rare or otherwise. On October 2nd and 3rd in Boston, DISORDER, the first Rare Disease Film Festival thrilled and inspired moviegoers, shining a light on the lives of individuals and families dealing with unique challenges and successes in coping with a rare disease.

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iHope continues for Rare Genomics Families

Last updated 13 Dec 2017, 02:02 AM

Rare Genomics Institute (RG) has led the way in supporting undiagnosed rare disease patients access next generation sequencing since 2011. At a time when clinical whole exome sequencing was still largely done only in the research setting, RG worked with these laboratories (mainly in research universities) to sequence undiagnosed patients and actually return the results for clinical follow up.

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RareShare Reaches Out

Last updated 13 Dec 2017, 02:03 AM

In September and October, Rare Genomics Institute participated in the Global Genes Patient Advocacy Summit in Irvine, CA and the National Organization for Rare Disorders (NORD) conference in Washington, DC.  At both meetings, Rare Genomics was there to spread the word about RareShare and its ability to connect those with interests in specific rare diseases, as well as to learn about the latest rare disease developments from leading experts

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Rare Genomics Institute Helps in Hailey-Hailey Disease Treatment Study

Last updated 13 Dec 2017, 02:44 AM

Rare Genomics (RG) was approached by the Hailey-Hailey Disease Worldwide Support Group to help conduct a study to test low-dose naltrexone (LDN).  Hailey-Hailey disease (HHD) is a rare genetic skin disorder characterized by blisters or erosions on the skin. These skin abnormalities can come and go throughout a person’s life. Certain triggers such as heat or friction can worsen the problem. 

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